CVD Network: Lipid Specialists Advisory Group Handover/Legacy Document. June 2016

Transcription

1 CVD Network: Lipid Specialists Advisory Group Handover/Legacy Document June 2016 NHS England High quality care for all, now and for future generations.

2 Version Control: Version Purpose / Change Author Date 1.1 Information Sue Long June 2016 Contents 1 Background Ongoing or incomplete work Achievements to date Future hosting arrangements Current membership of the group... 4 Appendix 1 Minutes June

3 1 Background The Lipid Specialists Advisory Group was initially established as a platform to promote cascade testing and identify GPs with special interest in lipid management and familial hypercholesterolaemia. The group meet four times a year with membership drawn from all acute trusts (there is currently a vacancy in South Tees). More recently the meetings have incorporated a MDT, accessible via teleconference also. Agenda is based on the following work plan; Familial Hypercholesterolaemia user manual Lipid analysis and reporting standards Combined Hyperlipidaemia investigation Acute Management of Severe Hypertriglyceridaemia Lipoprotein(a) cascading. 1.1 Ongoing or incomplete work FH user manual final version to be agreed and circulated to primary care Analysis & reporting standards audit to be circulated with a view to autumn presentation Combined Hyperlipidaemia investigation ApoE assay should be available by summer 2016 Acute Management of Severe Hypertriglyceridaemia Concerns around patient safety issues need to be addressed. 2 Achievements to date The Group were instrumental in developing the bid to the British Heart Foundation to set up a regional cascade service for Familial Hypercholesterolaemia. Alongside this bid a further successful bid was made to the Academic Health Science Network for NewGene to validate a regional model for diagnostic and cascade testing in FH. The regional CCG Forum agreed to fund the cost of the genetic tests. Members of the group have continued to support the project through development of guidance, clinical support to the FH specialist nurses and provision of education sessions for primary care 3 Future hosting arrangements The group will continue to meet four times annually. The current venue (Appleton House) is booked for the following dates Tuesday 6 th September (Committee Room 1) Monday 12 December (Committee Room 2) 3

4 Future room bookings can be made by e mailing andrewn.hall@nhs.net. At present there is no charge for the use of rooms at Appleton. It was agreed at the June LSAG that Sunderland would find out about using the Trusts teleconference account for the MDT. Regional documents will continue to be hosted on the Network website Contact for this is Su Young su.young@nhs.net. The documents currently published on the website are as follows Document Name Review Date FATS7 A strategy for the use of cholesterol lowering December 2017 drugs across the North East and North Cumbria NICE Quality Standard 41. Familial Hypercholesterolaemia September 2017 NICE Clinical Guideline 181. Lipid Management December 2017 North East Regional Strategy for Implementation of NICE September FH Guideline CG Terms of Reference April 2017 National Audit of the Management of Familial Hypercholesterolaemia North East Minutes and Agendas of meetings have also been published on the website, this will now cease and those currently on the website will be archived. The minutes of the June 2016 meeting are in Appendix 1. The group requested a channel to feed into the CVD network and it was suggested that the clinical leads forum may be the most appropriate mechanism for this. 3.1 Current membership of the group Mark Anderson mark.anderson7@nuth.nhs.uk Peter Carey PeterECarey@chsft.nhs.uk Tina Dawson td@heartuk.org.uk Iftikhar Fazal iftikharfazal@doctors.org.uk John Frater john.frater@nth.nhs.uk Peter Gray peter.gray@stees.nhs.uk Neil Hopper neil.hopper@chsft.nhs.uk Mark Jones mark.jones6@nhs.net Ahai Luvai Ahai.Luvai@ncuh.nhs.uk Sylvia McEwen sylvia.mcewen@ghnt.nhs.uk Dermot Neely dermot.neely@nuth.nhs.uk Louise Overend louise.overend@cumbria.nhs.uk Stewart Pattman stewart.pattman@nhct.nhs.uk Aimee Potter aimee.potter@chsft.nhs.uk Stuart Smellie stuart.smellie@cddft.nhs.uk Gemma Stidolph gemma.stidolph@chsft.nhs.uk Jola Weaver jola.weaver@ghnt.nhs.uk 4

5 Appendix 1 Minutes June 2016 Name of Group / Meeting: Lipids Specialist Advisory Group Date: Monday 27 th June 2016 Time: 14:30 16:30 Venue: Present: Committee Room 1, Appleton House, Durham Dr Dermot Neely, Dr Ahai Luvai, Dr Stewart Pattman, Dr John Frater, Dr Jola Weaver, Gemma Stidolph, Sue Long Apologies: Brief Summary of Meeting: ACTION POINTS: To discuss the lipids workplan including Familial Hypercholesterolaemia and Hypertriglyceridaemia. Agenda 1 Welcome and apologies Everyone welcomed and apologies were noted. 2 Minutes from the previous meeting Previous minutes were accepted as a true record 2.1 Matters arising Analysis & reporting standards information about the national meeting to be sent to DN July 206 AH 5 Update from nurses numbers are not a true reflection. Estimate have currently had 400 index

6 Agenda cases now Following a 38% reduction in budget and a reduction in staffing from 24wte to 14wte the network is now constrained to support the national NHS England priorities. For cardiovascular disease these are the reconfiguration of acute pathways in stroke and NSTeMI/ACS and vascular surgery services. 3 Network Update The network will no longer be able to support the LSAG meetings. A legacy document will be prepared to enable the meetings to continue in the future August 2016 SL A Trust teleconference account will need to be used for future MDTs September 2016 PC A future mechanism to feed into the network needs to be established. This could possibly be via the CVD clinical leads forum as the CVD steering group will cease. September 2016 SL The group agreed to recommend a specialist if expertise is required for any future senate work 4.1 Familial Hypercholesterolaemia user manual Lead for this identified as PC. Needs to be updated to include recent NICE guidance on PCSK9 prescribing. September 2016 PC 4.2 Analysis and reporting standards Lead SP. Following discussions on the necessity of fasting for LDL measurements, the use of 6

7 Agenda βquant was for decisions on PCSK9i suggested. SP Audit planned for the summer September Combined Hyperlipidaemia investigation Lead AL 4.4 Acute Management of Severe Hypertriglyceridaemia Lead JW. JW has used the protocol safely and with good effect. DN has used in ITU at NUTH. It was agreed that regional advisory guidance should be produced, possibly as an addendum to FATS. Need to find out if there is any ITU guidance. DN to send available documents to JW August 2016 JW DN 4.5 Lipoprotein(a) cascading 5 Snips Discussion on whether the patients identified with extreme Lp(a) should be cascade tested. This could be an opportunity for a pilot or a research project. It was thought that it should be cost effective and it was suggested that each lipid clinic build up a database of Lp(a) patients Snps assay on chip appears to be working and we can calculate Snp score work out index to link Snp score to non HDL centile score. Hope to have scores/index available for MDTs later in the year. The request forms has been amended to identify date blood was taken. All DN 7

8 Agenda 43 cases not put through by MDT have been tested only 2 were positive. Aim to test 50 in total if money is available. Sunderland support group has had first meeting, need to establish groups in other areas Looking to set up a Facebook page for patients Planning meeting at S Tees 6 Update from Nurses Ongoing GS/AP Numbers Index Rel +ve Child +ve Sund Newc North STees

9 Agenda Cum Gates 0 NTees 0 CDD 0 Total FATS/NTAG proposed adoption of NICE Eligibility Criteria for Anti-PCSK9 Mab therapy May say there is need to use βquant LDL-C. Will audit process. Discussion around whether genetic testing is required. DN 8 Service specification for lipid clinics Need to develop a benchmark of provision under tariff e.g. sees dietician. Everyone was requested to circulate thoughts on what needs to be included. September All 9 Research and Clinical Trials CRF Antisense for PCSK9 ongoing, ApoC3, Lp(a) are completed. AOB None 9

10 Agenda FH MDT Date and time of next meeting FH MDT took place. Tuesday 6 th September Committee Room 1 Appleton House Durham 10